As I sit here in my bed recovering from laparoscopic surgery, I have a multitude of thoughts and emotions running through my mind. First off, let me start by including a couple of stats regarding endometriosis. Keep in mind, I didn’t know all of this until I took a full dive into the world of endo when my wonderful OB doc/friend suggested that I have a diagnostic laparoscopic surgery done to either confirm our suspicions, or let us know that we needed to look in another direction for the reason I was in excruciating pain. Needless to say, there was a lot riding on this surgery, and I had anxiety that I’d go through with it and still not have answers, but thankfully that wasn’t the case. Classic Endometriosis could visibly be seen from the cameras, and almost all of the seven biopsies taken came back as Endometriosis.
- The NHS named the top 20 excruciatingly painful conditions that someone can suffer from, and endometriosis is on this list.
- Endo is when tissue similar to the lining of the womb grows in other areas of the body, most commonly in the pelvic region. This tissue responds to hormones in the same way as the lining of the womb but, with no outlet, it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms.
- Endo is estimated to take approximately 7.5 years to diagnose.
- Endo is roughly estimated to effect about 10% of reproductive age women.
- There is no cure for endo.
When I think back to when I first started having symptoms of endo, I was in nursing school, so this was about 2014 probably. I remember having a couple episodes of severe cramping, enough that it sent me to the ER once. Of course, nothing came of that ER visit, and I was told by that ER doc that I was most likely experiencing “somatic pain from the stresses and anxiety of nursing school.” This cramping persisted on and off for a couple of years, and I was referred to a GI doctor because the cramping was thought to possibly be a stomach issue instead of a gyn-issue. After having a couple of colonoscopies done, nothing was ever found, and I just kept living with the on and off pain.
Looking back, the stress of nursing school probably really did escalate my symptoms. I’m not sure what causes endo flare-ups, but I’m sure stress, lack of sleep, and anxiety doesn’t help. Not too long after nursing school, I decided I wanted to pursue nursing in the Air Force. At this time, I was exercising a lot, eating good, and was probably in the best shape of my life since high school. A couple years of being in the Air Force goes by, and I move to be stationed in Alaska for my second assignment. Once I got to Alaska, my symptoms seemed to flare up again. I remember when I first got stationed here, my new PCM called me and welcomed me to JBER and asked if I had any current health concerns. I replied by saying I was having almost constant pelvic pain, and I didn’t know why. She ordered me some tests, which all came back negative. When I called back saying, “well I’m glad everything came back negative, but I ‘d really like to figure out what’s causing this pain I’m having,” she gave me a long sigh and said she’d schedule an appointment for me to come in to see her. At that appointment, I explained to her what I was feeling, and I was referred to a GI doc, again. I had to do another colonoscopy and a bunch of stool samples, again. And everything came back negative, again. At this point, the GI doc said she was going to diagnose me with IBS, considering the pain I was having was also often coinciding with an upset stomach as well.
So okay, I have IBS. Fine. I could deal with that. I went on with my life and tried to live to the best of my ability. On good days, I would go hiking, spend time outside with my dog, hangout with friends, all normal things. Come to find out, women with endo are often misdiagnosed with IBS before it is realized that they have endo. Is that what happened with me? Maybe, I’m not sure, but I guess it’s possible. About a year later, I ended up in the ER on base with horrible cramping, high fevers, and uncontrollable shaking at times. I ended up being diagnosed with PID possibly caused by bacterial vaginosis. When I followed up with my PCM after this incident, I asked her if she thought I could possibly have a condition like endometriosis because of my constant cramping. She just blew me off and totally ignored my question, unwilling to advocate for answers to my pain.
Over the last 2.5 years or so, cramping has been a regular occurrence for me. It started off as intermittent and usually tolerable, but eventually it became constant and detrimental to my life. Honestly over the past year, I can’t think of a time when I wasn’t cramping. It’s just that some days were worse than others, while others were more tolerable. Soon enough, I found myself cancelling plans with friends because of the pain, not going out as much, not working out, and becoming quite anxious and depressed. Some days I didn’t even want to get out of bed, sometimes because of the pain and fatigue, sometimes because I was depressed. One of the best ways I can describe what I feel is that my pelvic area constantly feels swollen, congested, and always bloated.
Something happens inside of you when you are constantly living in pain and you don’t have a good reason for it. You start to wonder if you are crazy, a big baby, or just plain dramatic. After enough time passed of being in severe pain, I knew in my heart that this was not normal. I found it very difficult to care for my own patients at work because I was feeling so fatigued. I felt so drained at times that I felt like I didn’t have anything to give to anyone, including my patients, friends, family, and my boyfriend. I became anxious about my health and not having answers, as well as depressed because I constantly felt awful and couldn’t do or enjoy activities that I normally would. About a month ago, right before my surgery got scheduled, I remember laying in bed with a heat pack on my belly asking my boyfriend, “how am I supposed to live like this?”
A large part of my anxiety surrounding this involves being active duty military as well. Last year, I found out I was selected to be my unit’s primary deployment nurse. I had to do all of this extra training in order to prepare for this, and normally I would’ve been super excited for this opportunity, but it was honestly hard to do all of these extra requirements while feeling the way I was feeling. I would often think to myself, “if something happens in the world and I get deployed, how am I going to mentally cope feeling this physically bad while being in an unknown and possibly dangerous environment?” If I was going to be deployed, I wanted to be the best I can be in order to help my fellow service members and civilians that would need me.
I’m not typing any of this for sympathy purposes. If I’m being honest, one of the main emotions I’ve been feeling is anger. I’m angry that it took this long for me to receive a diagnosis of endo. I’m angry that it took finally meeting my very good OBGYN friend at JBER after years of being in pain, and she took my concerns seriously and advocated for me to get answers. I’m angry for all of the other women out there who are dealing with this pain and are being told it’s “somatic pain from their anxiety” or normal pains of being a woman. I’m angry for the women who don’t have easy access to medical care and are just living their lives in excruciating pain. Probably going to ruffle some feathers with this one, but I’m angry that this is a disease that affects 10% of reproductive-aged women, yet it still takes over an average of 7 years to diagnose, but I bet if it were a disease that affected 10% of males, it would have been a much bigger deal years or even decades ago.
If you’re reading this and are discouraged and wondering if you may possibly have endo, I’ll lay out my symptoms for you just in case, but just remember it presents differently for a lot of women. For me, it started off as intermittent pelvic cramping that progressed to constant pelvic cramping, and it often radiates down my thighs, even to my toes sometimes. It normally gets really painful when I’m supposed to be ovulating (even though I don’t ovulate because I am on oral birth control pills) and when I am standing for long periods at a time. My boyfriend and I were at a hockey game with some of his work friends a couple months ago, and we were standing at the glass watching and socializing the whole time. I eventually whispered in this ear that I may have to sit down eventually because the cramping started to get so severe. The cramping is usually only relieved well by hot baths. I also have intermittent back pains that feel like someone is pounding on my back with a hammer. I have diarrhea often, no matter what I eat, and I often feel like I have a UTI when I actually don’t. My bladder often feels very irritable, and it feels like I have to pee all the time, or that I can’t get everything out when I try. One of the worst things, in my opinion, is just the constant fatigue. Sometimes it doesn’t seem to matter how much I sleep, I am still so achey and tired all the time. My whole body feels inflamed and angry at me much of the time.
Despite all of this, I have overwhelming feelings of gratefulness from this whole process. First of all, I am so grateful to my very good friend who performed my surgery and diagnosed me with endometriosis. I cannot even begin to say how it feels to finally have a reason for the pain I’ve been experiencing for almost a decade. Not once did she ever question my pain in a judgmental way, and she always made me feel safe and comfortable discussing my medical care with her even though we are great friends and work together often. I know it’s not the end of the road and that more surgeries are definitely possible in the future, but at least I have a diagnosis now and can be at peace with that. I’m also so so thankful for my family and friends that have been there for me constantly. They’ve understood when I’ve cancelled plans because I wasn’t feeling well. They’ve had my back when it came to missing work and scheduling my surgery. They’ve sat around and been lazy with me when I didn’t feel like I could do anything else at the time. To my sweet pain in the ass of a boyfriend, I cannot thank you enough for taking care of me after my surgery, listening to my fears and concerns regarding everything, and taking care of our fur children. I am forever thankful to all of you. ❤
Well, now that I have tears in my eyes, I think it’s time for me to end this giant essay of a post and continue working on my acceptance. I wasn’t sure what all I was going to write on here, but I knew that it would be therapeutic for me because I like to write and journaling has always been a good outlet for me. If I am able to help someone else or give someone else struggling with endo comfort, then that will bring me such joy. Even if you aren’t dealing with endo and are just having anxieties about your health but don’t have answers just yet, I am a good listener and will be there for you. Keep in mind, if someone seems off to you, there is a chance they are living their life in chronic pain. They may not want to talk about it or divulge everything because they don’t want to seem like a burden. Just be there for them.
Love to all you Endo warriors out there. You are definitely not alone.
With love,
Sarah Tolbs
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